Happy Holidays! Folks is taking a break until January 2nd. In the meantime, enjoy this story from our archives. Originally published on June 20, it is one of our favorite pieces from 2017.

A miracle is not always what it’s cracked up to be.

Don’t get me wrong, I believe in miracles. I’ve prayed for them. But there’s always a trade-off.

Several years ago, I was diagnosed with pulmonary fibrosis: a nasty disease where fibrous scar tissue spreads through the lungs and smothers you to death. Imagine being choked to death from the inside by a writing rat king of your own scars.. Nasty. And there is no cure.

Annie Stein before her transplant.

The disease can progress slowly over the course of several years, like mine did. But when it gets moving? Hold onto your hats.

One day, you’re breathing on your own–admittedly huffing and puffing, as if you’d just ran a race, but still doing fine. Then, the next day, wham! You’re on oxygen, 24/7, and going downhill like a racecar.

By last June, my disease had progressed so quickly that I was given the choice: lung transplant, or die within a year… and a painful year it would be.

With a husband I adore and two daughters in their 20s, for me, that wasn’t much of a choice at all. But then I went to my first appointment.

I believe in miracles. I’ve prayed for them. But there’s always a trade-off.

First of all, it turns out getting a lung transplant is hardly an option for most people. In fact, it’s harder to get on the transplant list than being accepted as a member of the Pebble Beach Golf Club, except unlike Pebble Beach, it has nothing to do with money or who you know. It’s about the strength and health of your heart, your liver, and your kidneys; it’s about your age, your home care situation, and your emotional and mental health. Luckily, I scored well on all the tests–a first for me and tests of pretty much any kind.

Even if you’re a good candidate, though, that first appointment gives you the lowdown on the potentially ugly side of post-operative life. Downer statistics like transplant success rates, life expectancy rates, and the full monty of side effects you can expect from the flotilla of meds you’ll need to be on to keep your new lung functioning.

The big guns in this army are the immunosuppressants. Our immune system’s job is to fight foreign invaders, which includes colds, flus, viruses, and–yes–new body parts, like a foreign lung inserted into your chest cavity. So unless the big guns keep blasting, your immune system will try to get rid of your new lung… even if you don’t have a functioning original lung to do the same work.

Either way, they can create some gnarly side effects. Whether doctors are bound by law to fully disclose them, or my particular doctor was closer to the ultraviolet end of the doomsday spectrum, I’m not sure, but by the time I left the office, I was no longer convinced that “get a new lung” was the only choice available to me, because it came with a very good chance of getting every cancer and infection that came down the pike.

It got me thinking about that husband of mine, those daughters I adore. I would give anything for more time with them, but was it better for them if I went cleanly, sooner rather than later? My husband is still young enough and attractive enough to find an energetic, fun-loving companion, I thought. And my girls… perhaps I’ve given them my best?

Forget Sophie’s Choice. This one was all mine.

Forget Sophie’s Choice. This one was all mine.

It’s been seven months since my transplant, and the fact that I’m sitting here writing this tells you which choice I eventually made. But it wasn’t without cost.

Most people assume that the transplant surgery, and the recovery period of a month or so after, was “IT” with a capital I-T. Get past that and you’re home free: breathing like a champ, climbing stairs, walking the dog, making love, living life as you knew it. Wishful thinking.

Annie, her two daughters, and her husband.

Before I got my transplant, one of the doctors on my team told me–several times, in fact–about a patient of his who was playing tournament tennis eight weeks after his transplant.

God bless him, because eight weeks after my transplant, I was pulling fists full of hair out of my hairbrush with hands that never stopped trembling. My hair was falling out due to just a couple of the two-dozen meds I have to take every morning. As for the shakes, or tremors as they’re called, they came from my daily dose of steroids… steroids which also give me perpetually cracked lips that no amount of Chapstick has cured.

Same with the insomnia, or the two-month long bouts of flu, that have come from my ‘big gun’ immunosuppressants doing that huge, important job of keeping me from rejecting this gorgeous new lungs. What can I really do about these drugs that are robbing me of my hair, my sleep, and sometimes even my sense of humor except take them and try to be grateful?

That’s the trick for anyone blessed enough to receive a life-saving body part. To make friends with it…

So I do. I think about what I’m going to wear to my daughter’s college graduation next year. I look forward to Stand Up Paddle Boarding again. I go wig shopping. It’s all about my “new now”–the trick is to make friends with it. I think that’s the trick for anyone blessed enough to receive a life-saving body part. To make friends with it, and get into gratitude as quickly as you can.

The truth is, there ain’t no such thing as a free lung. Once I understood that, I began to warm up to my new now. I can’t say that we are BFFs yet, but there’s warmth and respect. And maybe, one day, true friendship will grow between us.

https://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.png00Annie Steinhttps://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.pngAnnie Stein2017-12-26 09:18:012017-12-26 13:10:00There's No Such Thing As A Free Lung

The first time I realized my dad wasn’t like other dads, he sat straight up in bed, wide-eyed, and started screaming: “WHO ARE YOU? WHAT ARE YOU DOING HERE?”

I would later become a smart aleck, but at the time, I was three, maybe four, so I didn’t respond to these questions the way I might now: “Hey, if anyone should know, it’s you.”

Besides, my father wasn’t joking. As he shook me by the shoulders, his eyes rolled white in his head, like the eyes of a terrified animal.

A moment before, I had been watching Sesame Street on the edge of my parents’ bed. My father was napping. He’d been sick for the last couple of days, so he’d stayed home from the office that day. It must have been late, because my mother, who also worked, was home. I think it was spring or summer, because it was still daylight out.

Or maybe it was a weekend in winter. How can you totally trust a 35-year-old memory? All I know is that when I remember that day, it happens in the evening. In the springtime. And my father is still there, still alive, shaking me by my tiny shoulders and yelling.

The reedy tremolo of terror in her voice gives my father, deranged, another vector than the small, shivering child he was shaking in his hands. (Did he know I was a child, let alone his child? Was he that far gone? Another answer I’ll never know.) He erupts from the bed, hurling me into the corner, and by the time I have picked myself up from the floor, the bedroom is empty.

I follow him into the hallway, sniffling. I feel the overwhelming guilt of the toddler, whose heart crushes itself under the solipsism of his newness. Whatever is wrong with my dad, I must be the cause. Yet I have no real idea of what it is I could have done.

Whatever is wrong with my Dad, I must be the cause. Yet I have no real idea of what it is I could have done.

He’s in the hallway now. Sun slants between the bannisters, painting dazzle camouflage against the staircase wall. He strides down it, something primal, senselessly screaming. My mother, also screaming, tries to meet him halfway, but with the effortless grace of an acrobat, he throws her over his shoulder. He has almost a foot of height on her; I peer from the top of the staircase as she is carried, kicking her legs, into the shadowed floor below. I don’t remember what she’s wearing, but her hair is a brown perm, laced with the gold of 1983 sunshine. Her face is toward me.

“Go upstairs John!” she shouts at me, with frantic eyes, as he carries her down. “Run!”

I do run. I run back to the bedroom, where I close the door. Sesame Street is still playing. Things have happened so quickly that the very same skit my dad and I were watching together when he suddenly threw me across the room—sculptor Ernie plopping an orange nose onto a clay Bert—is still playing.

There, quaking in shock, I feel the floorboards beneath me vibrate as my parents howl and wail. Then, muffled, they both go quiet, and I hear my father sobbing. It curdles at the edges: a sob of utter existential defeat. There’s no power in it at all.

And that’s when I finally start crying too.

My dad spent the night in the hospital, maybe two. It was explained to me he’d had a reaction to a new medication; weaned off it, my dad was back a few days later, good as new. We never spoke about what happened that day. When I was younger, I thought it would shame him; when he was older, he would have no longer remembered any of it.

But that was how I learned that my dad was mentally ill.

As I write this, a third of a century later—my father’s ashes carefully locked in a gold-foil vacuum seal bag and placed in an understated black urn on my desk, so I can look at him as I write—I marvel at how easily my father’s severe depression was slotted into that long-ago toddler’s universe. In the span of a nightmare, I effortlessly swallowed up this new and horrible fact that the author of my being was just a flipped neuron away from being an entirely different person, one who forgot who I was, and even attacked me.

But when I think harder about it, I suppose it’s not so surprising.

Even before his illness was revealed to me in such stark relief, he laid the groundwork preparing me to understand.

The Brownlee FamilyClockwise from left: Sally, Bruce, and John.

According to family legend, the day my parents took me home from the hospital, they got in their first fight about how I should be raised.

Tired, my mom had asked my father to watch me while she took a nap; when she woke up, my dad and I were cuddled up in the living room’s cathode-ray gloam, watching a lycanthropic Oliver Reed bare his fangs on Channel 56’s Creature Double Feature. As someone who has been on the end of them, I can imagine her reprimanding shrieks. But from that day on, monster movies became a lifetime bond between me and my father.

A few years later, I remember cheap vinyl socks crackling as I sleepily ambled downstairs at night in my Dr. Denton’s, drawn to the flickering, fluorescent orange-blue that filled the living room like will-o’-the-wisps. My dad was in there, drinking a beer—he would stop drinking entirely because of medications a few years later—and watching The Howling. He picked me up, sat me on his lap, and we watched the last few minutes together.

I remember a lustrously coiffured Dee Wallace as a nightly news anchorwoman transforming into a gossamer blonde werewolf before being shot to death on-air by her executive-producer boyfriend. I wasn’t scared. I was fascinated. But one thing confused me.

As Dad tucked me back into bed, not even bothering to ask me not to tell Mom about this—we were always complicit on the subject of monsters—I remember asking him: “Why was the monster lady crying at the end?”

“It’s because she’s not a monster. She can’t help it. She’s just cursed.”

He pursed his lips in dry mock seriousness, nodded sagaciously, and quipped: “She must have been having a bad hair day!” (My father and I shared a sense of humor that is best described as equal parts Evelyn Waugh, Groucho Marx, and Al Jaffee’s Snappy Answers to Stupid Questions.)

But then, I remember, he became thoughtful. He walked to the door, flicked off my bedroom light, and stood in the doorway. Molten around the edges, his far side illuminated, his profile an unknowable eclipse, he said: “It’s because she’s not a monster. She can’t help it. She’s just cursed. Love you, John.”

And then he shut the door.

So while it’s remarkable that I accepted my father’s depression so readily as a toddler—particularly following such a violent mental episode—it’s not so surprising when you realize that I already knew about werewolves. And what was my father if not a werewolf: the slave to the susurrus of primal tides whispering to him in a voice that only he could hear?

Panels from Tales from the Crypt No. 35, a horror comic John and Bruce used to read together. (Published with permission, William M Gaines Agent, Inc.)

Not that I believed lycanthropy was what literally had happened to my father that night when he shook me by the throat. I didn’t go into pre-school the next day, and, like Calvin, throw open my hands while dramatically intoning the title of an invisible ’50s movie marquee: “My Father Is a Werewolf!” I only mean to suggest that I accepted the fact of his personality-altering mental illness with the same innocence and appreciation of irony with which toddlers accept all fairy-tale curses.

Decades later, the werewolf analogy still helps me make sense of my father. Because, as with a werewolf, it is impossible to peel the man and the depression apart when you’re talking about him. They exist forever co-mingled, not in tooth-and-claw but in temperament.

Bruce Brownlee

My father, Bruce Gordon Brownlee, was born on December 30th, 1950, and died just 66 years and one month later.

As the oldest of three boys, his birthday caused him a great deal of anxiety growing up. He was never sure if there was a conspiracy between his parents to keep a few presents back from Santa to give him on his birthday, thus affecting a karmic sort of gift imbalance between him and his brothers. So, for his only son, he overcompensated. My Christmases growing up were maggoty with presents, and from my father—who never gave a gift that he wouldn’t want to get himself—my childhood was filled with formatively corrupting presents: sci-fi paperbacks, bound collections of horror comics with titles like Tales from the Crypt and The Haunt of Fear, and home-pirated VHS tapes packed with B-monster movies.

Dad spoiled me growing up, but he was generous with everyone, in quiet, understated ways that taught me a lot about what it meant to be giving. I remember, for example, that every time he went out shopping, he came home with a Hershey’s bar and a romance novel for my mother; unable to tell the covers apart, or remember the titles, he’d find ones she hadn’t read by checking the publication date. This is still, for me, the very definition of romance.

My father was generous, but he was also depressed, and the nature of depression is to be selfish.

I think about my father’s generosity a lot. My father was generous, but he was also depressed, and the nature of depression is to be selfish: to starve those who love you of the best of you, in the relentless feeding of that which can never be nourished. In that, he—the most depressed person I ever met—was also the most selfish. For my entire life, he would give me anything I asked for, as long as it was a movie or a book. But when my mother and I begged him half a dozen times to go see a doctor if he loved us, he wouldn’t lift a finger. How do generosity and selfishness co-exist like that in a person without destroying him?

I don’t know. And, of course, it did eventually destroy him. But that was my father: a lycanthrope of contrasts. Whatever he was, he was also the opposite.

Dad prided himself on his intelligence.

For a long time, I worshipped him for it. He was undeniably a brilliant man. As long as I knew him, he usually had two or three books going at once, ranging from trashy pulp paperbacks to sweeping overviews of post-Enlightenment culture. A shut-in for the last twenty years of his life, he probably read an average of a book a day. And if you were a fellow reader, to come over to his house meant having an armload of books foisted upon you: obscure Russian sci-fi novels, lectures by Nabokov, thick encyclopedias on film theory, or whatever other subjects your brief conversation might have touched on.

My dad’s recommendations were so good that, later in life, when he had been robbed of most of his memories, I would recommend books back to him that he’d made me read years before. He’d then brag to his friends about what great taste in books his son had, never knowing I’d grifted him with his own discernment and taste. (I don’t feel guilty. How many of us can say we’ve had the good fortune to read our favorite books for the first time twice?)

He knew just as much about film. Even more about music, if you can believe it. But none of his intelligence prevented him from being a colossal dumbass about the important things.

Take his health. The man—a three-to-four-pack-a-day smoker for most of his life—honestly believed that the health concerns around cigarettes were overblown. Since 1985, my parents lived on a steep hill, and the only sunlight he got for the last decade of his life was walking down to the corner to buy his Marlboro Lights 100s. In the last months of his life, it turned out that he had experienced light-headedness, numbness, and chest pains multiple times on this twice-weekly nicotine pilgrimage, but he never once told anyone about it. Instead, he would take so much aspirin his nose would bleed, while wrapping a frozen towel around his body like some sort of strange albino ice yogi, ignoring the tell-tale signs of what were proven later to be multiple heart attacks.

When he eventually had such a massive cardiac event that his heart practically exploded on the spot, my mother told me she thought he’d known he was having heart attacks but chose to ignore them as a way of killing himself. This, I think, is putting an overly heroic sheen on it, but the interpretation doesn’t surprise me. My mother worshipped my father, and there’s something noble about a slow, plausibly deniable suicide. But an intelligent, well-read man ignoring the obvious signs of his own impending heart attack while his loved ones beg him to see a doctor? That’s just the setup to a bad fucking joke.

The truth is, as I knew him, my father in his later years was a man who could intellectualize his way around anything, up to and including his own heart attacks. Intelligence, for him, had become not a tool to be applied to the real world, but something that replaced it: the ultimate nicotine patch.

A self-described “Jeffersonian liberal” and “Buckley man,” some of these justifications were political. Incapable of earning a living, my father railed bitterly against social welfare programs designed to help people like him, despite the fact that if it were not for my mother, he could not afford to treat his depression. Likewise, my father was a lifelong defender of science and sweat profusely if the mercury went above 68, but when he died, his reading table was stacked with small press treatises denying climate change.

Yet if anything, I found these rationalizations more understandable for having been political. Such intellectual infections are as subjective as they are universal; not so his other justifications, which served no other purpose than to shield him from the quick of life.

In the last years of his life, flesh-and-blood experiences became things no longer worth having. So though, through his library, he’d practically lived in Europe since he was 18, he never expressed interest in coming to visit me during the decade I lived there; there was nothing there, he insinuated, he hadn’t already experienced. Likewise, if Mozart himself had come back to life, my father–the man who took me to see Miles Davis live when I was three–would have expressed no interest in seeing him perform.

Before my father died, I once thoughtlessly told him that I didn’t care if my own kids grew up to be intelligent as long as they grew up to be kind, daring, and hardworking. To that, he didn’t say anything. He just lit a cigarette. Or he tried to. His hand was shaking so badly, he lit his sleeve on fire.

Intellect, you see, was all the self-worth he had left.

Growing up, my dad was my best friend. We were more than inseparable buddies; he was my hero.

When I was just a toddler, and his depression wasn’t as bad as it would one day become, my dad would take me down to Brookline every Sunday to a movie theater called Off-the-Wall. There, he would buy me a brownie, and we would watch old Buster Keaton shorts, while a tweed-decked septuagenarian accompanied the flickering silver screen on an out-of-tune ragtime piano. This is a quintessential “Dad” memory for me: How could anyone have a better date with their father?

When I was four or five, we played the same game every night. It went like this: right after my dad read my bedtime story to me, he would grab my favorite bath toy—a rubber rooster with a built-in squeaker that kind of looked like a down-rent Foghorn Leghorn—and jump under the covers with me. There, we would hide, snorting and giggling, until my mom came in to play her part. “Where’s Bruce and John?” she’d ask, ever the straight man, while the squirming, human-size lumps under the Return of the Jedi duvet responded in chorus: “Nobody here but us chickens! Cheep, cheep, cheep.”

My dad and I loved to draw together. He was particularly great at it, especially before his meds took away his hand coordination. One of his cartoons, called “My Pal, the Trashcan,” still sits framed on my desk, 33 years after he drew it. It’s essentially a self-portrait. My dad stands in the background with a fedora and an exclamation point above his head. I’m the pot-bellied kid, his belly button peeking out. My pal’s, quite obviously, the trashcan…not to be confused with the mythical toilet from which my father always insisted, with great solemnity, he had plucked me as a baby and for whom I am named: John.

My Pal, the TrashcanBruce Brownlee

No one made me laugh harder. When I went to summer camp, he would send me care packages of comics and non sequitur postcards that were so hilarious that my camp counselors would read them aloud to the entire camp over mail call. One, featuring Humphrey Bogart smoking a cigarette, says on the back: “Dear John–Going through some old photographs, we came upon this baby picture of you! Boy, you sure were cute. (Note the pacifier.)” Another, which I’ve sadly lost, alleges to feature him indulging in extracurricular activities during a typical day at summer camp in the ’50s; the picture on front is Indiana Jones punching out a Nazi.

Years before MST3K, he and his brother, my Uncle Bob, initiated me to the joys of movie-riffing, ragging on movies like Plan 9 from Outer Space and Robot Monster until I was practically hyperventilating with laughter. He introduced me to Harvey Kurtzman, Firesign Theater, Jeeves and Wooster, MadMagazine… influences which shape my sense of humor to this day.

We even traveled together. I remember a family trip we once took to Minnesota, where he kept me busy for three days straight by feeding me horror comics he’d squirreled away under the driver’s seat. One summer, we went down to Washington, D.C., to visit Uncle Bob, and he took me to a John Zorn concert, where the avant-garde saxophonist performed a cover of the ’60s Batman theme as if just for me.

These are the years I remember most vividly about my father.

The further back I go, the more clearly defined he was.It’s when I remember him in the later years of his life that he grows hazier. The memories themselves don’t go fuzzy; he does.

In 1989, my father—bullied at work for his mental illness—quit his job and became, for all intents and purposes, a shut-in.

As a writer, it makes me sad that, for what would end up being the last three decades of his life, there’s almost nothing to describe about this period, except to say it was one of slow-motion entropy. During it, he gradually lost abilities most of us wouldn’t even think to call “skills”: To pick up the phone and call someone, go visit a relative, or even just open the mail.

Within just a few years, my father’s entire life circumscribed an irregular quadrangle just a couple thousand square feet in area. One axis was the local gas station, where he bought his cigarettes; another, his bed, where he slept 16 hours a day. A third was his office, where he kept his computer and which—after his death—was so clogged with depression and ash that you would believe he’d been cremated there on the spot. The last axis was the couch, where a Dad-shaped indentation weighs down the springs to this day. It was here he read books, watched movies, and drank coffee by the pot.

Over time, he started refusing to see his psychiatrist regularly. This didn’t result in him being cut off from his meds: His psychiatrist continued to prescribe them based on my father’s emails and my mother’s reports on how Dad was doing.

He also stopped seeing other doctors. The result was that we no longer had any idea how many of his shakes and tremors were because of his meds and which were because of his undiagnosed illnesses.

Likewise, he wouldn’t see dentists, so he started losing his teeth. His resulting self-consciousness formed a closed feedback loop with his depression, dead-bolting him in the house. His hair grew long and lanky; he became so pale as to be nearly translucent. At 65, almost nocturnal, he had the look of a toothless white wolf.

Every werewolf story is about a silver bullet.

This was true for my father. But the silver bullet he believed would one day cure him wasn’t literal. It was some magic drug that would one day be fired out of the rotating barrels of a pharmaceutical company’s R&D revolver.

If you suggested that he go for a walk or a run, or go with you to a movie, or volunteer somewhere, or see a therapist, Dad would openly scoff: He’d tried all that, and the only thing that ever worked against his depression was drugs.

“No one really understands why the brain works the way it does.”

In his youth, he’d apparently abused alcohol and experimented with psychedelics; it was to his great credit that, once I was born, he’d mostly given these up for my mother. “Booze was the only thing that ever really made me happy,” he once told me, wistfully, through the literal rose-colored sunglasses he wore whenever he left the house, even on the cloudiest days.

But until I was about 27 or so, he still held out hope that the next medication he was prescribed would be the one that would finally obliterate his depression.

“No one really understands why the brain works the way it does,” he would often say, like a priest reciting a holy mystery. According to this logic, then, it was just a roll of the dice before the pharmacologists stumbled upon the mystical alignment of molecules that would make his brain work like it should. Until that moment arrived, there was little point in doing anything but wait; happiness could not be found in anything but chemistry.

Yet even from an early age, I was doubtful my father would recognize the silver bullet he was looking for if and when it ever came for him. If you asked him on any given day how he was feeling, he’d reply: “It’s the worst day of my life,” no matter whether he was comatose with depression or talking to you on your wedding day. It was almost like my dad had lost his inner compass to tell you how he was feeling: even if he acted like he was feeling better, he’d tell you he was feeling worse.

I once asked my dad what he thought happiness was; he told me it was a gin and tonic. He wasn’t joking. The only way my father could imagine the experience of not being depressed anymore was to equate it with being euphorically drunk or high. But this isn’t what wellness is. Neurotypical humans still feel sad, and hopeless, and anxious, and overwhelmed. It isn’t that they are happy all the time: it’s that they’re capable of happiness in the first place. I realized my dad didn’t understand this, and because he didn’t understand it, all his silver bullets would inevitably wear away to show the brass beneath.

No wonder the medications he thought were “working” made him manic, and inevitably led to deep crashes, which just made him ever more desperate.

No wonder the silver bullet he eventually turned to came from a can.

Tales From The CryptNo. 35 (Published with permission, William M Gaines Agent, Inc.)

One morning, shortly before dawn, my mother awoke from a nightmare very early to find herself sleeping alone. This wasn’t unusual—my dad was a night owl—but when she went downstairs, she found him in the living room, drinking a six-pack by himself.

It was a bigger deal than it sounds. Drinking while taking the sort of meds he was on could trigger another violent episode like the one that had happened so many years before. Twenty-odd years earlier, in fact, my mom threatened to leave Dad if he ever drank again. From then on, he never drank a drop.

But he was drinking now. It was a sign of how truly desperate things had become.

My mother didn’t leave him. How could she? She worshipped him. But as a last-ditch effort to cure his depression, they went to his psychiatrist and told him—over the doctor’s objections, surprisingly—that they wanted to try something extreme: electro-convulsive treatment, or ECT.

In other words, electroshock.

In other words, electroshock.

I was 26 or 27 and living abroad when my mother called to tell me about this.

“No one really knows why it works, but it does,” my mother insisted, blindly repeating one of my father’s holy mysteries into the telephone mouthpiece. “It’s not like in One Flew Over the Cuckoo’s Nest. Really, the stigma of this treatment has really prevented a lot of people from being helped!”

Stunned, I said nothing.

More to fill the silence than anything, my mom told me all the possible side effects: confusion, disorientation, memory loss. But those side-effects would be temporary, and if it worked, my dad’s depression might be cured.

When she was finally talked out, I stammered: “When do you think… when would this start?”

A long pause.

It had already started.

Initially, I followed the lead of my father’s black humor and treated his ECT like a joke.

From my mother, I heard that my dad had ironically started wearing a T-shirt with Daffy Duck dressed as Napoleon to his ECT sessions. Delighted, I completed his outfit by mailing him a crushed velvet bicorne, replete with a large N stitched in French piping across the front. Eventually, I heard from my mother—my dad was always too tired to talk on the phone during this period—that this ensemble was eventually banned from the ECT ward, not because it was insensitive, but because it was making Dad’s fellow depressives laugh too much.

It was only when I came home for Christmas that I realized exactly how invasive the treatment really was.

It was a few months after his treatments began, and he’d had a session before my plane arrived.

“Look, Bruce, it’s John!” my mother said, with a not-quite-convincing air of nonchalance when he came slumping down the stairs as we arrived home from the airport.

My dad covered up his confusion, but I could tell he didn’t recognize me at all.

And suddenly, ECT didn’t seem so funny.

In the end, my father had about 18 ECT sessions over six months. “Far, far too many,” my mom said gravely when I asked her to confirm that number ahead of writing this. (Patients usually receive six to twelve sessions.) “We should never have kept going.”

Looking back, it’s hard not to agree. But for a while, the changes seemed miraculous.

Yes, my dad’s memory was shot. When it came to me, it was as if he’d experienced a time jump. He remembered me up until my tenth birthday or so, after which, I suddenly aged 17 years overnight.

Those memories never came back; to reminisce with him about something, I’d have to tell him the memory first. He simply had no recollection of how I had grown into the man I had become, and for the rest of his life, viewed me with a combination of love and awe, as if he wondered: How can this normal, functional person be my son?

But it had its advantages. For example, I no longer had to worry about whether or not I was buying books he’d already read for Christmas or his birthday. We got to watch Robot Monster together and laugh at the Billion Bubble Machine all over again, as if for the first time. And it blotted from my dad’s memory some of the more embarrassing or shitty things he’d caught me doing over the years: when I’d stolen money from his wallet as a teenager, for example, or the time he’d caught me watching some vintage ’70s porn when I was 15.

I also enjoyed my father’s utter incredulity about some of the more peculiar specifics of our shared history. For example, when I was 19, my dad once woke me up in the middle of the night in a panic. He had somehow infected my mother’s work computer with a virus that had converted the screen of her Windows 95 desktop into what can only be described as a pornographic amalgam of pulsating, 16-bit genitalia. “I don’t know what I did, but you gotta help me get it off before your mom wakes up, John!” he hissed to me through the door.

My dad was in stitches when I told him this; he just couldn’t believe it had happened.

The reason my mother and I were able to overlook my dad’s memory loss was because he suddenly wanted to do things again.

In the middle of his treatments, Mom and Dad took a trip up to Wells Beach in Maine, where I was conceived. There, they walked the beach and talked about their future…something they hadn’t done for years, because depression has no future.

They talked about their future… something they hadn’t done for years, because depression has no future.

And Mom wasn’t the only one who benefited. On my second visit home after his ECT, my dad asked me to take a walk with him, seemingly for the hell of it. We walked for about a half hour, talking about movies. To this day, although I can barely remember where we walked or what we discussed, the emotional memory of that walk makes something swell painfully in my throat.

The truth was that I could live with a father who didn’t remember where I came from, as long as we had a future together.

Right before I moved to Ireland, I remember coming home one night and finding my dad in the living room, sitting quietly. I thought I’d join him, but as I approached the couch, his eyes barely flickered at me before resting back on the silent TV. I must have thought he was engrossed in a movie—maybe one of those old silent movies we used to watch together—but when I sat down, I saw the television was off.

“Watching a ‘Zero-D’ movie, huh, Dad?” I asked him, recycling one of his favorite jokes–a play on 3-D movies–from when I would hide my eyes while watching scary movies as a kid.

He didn’t laugh. He didn’t smile. His eyes didn’t shift. He just kept smoking, silently. And when he was done, he stubbed out the butt and lit another one, just as quietly.

We sat there for some time, at midnight, watching nothing together. Then I kissed him on the forehead and went to bed, knowing in my heart that the next time I flew back to the States, it might be because he’d spilt his veins into the sink.

Compared to the fatalism of my father’s impending suicide, ECT seemed like a godsend.

My father was the one person who didn’t think the ECT had worked. But we didn’t take him seriously.

We didn’t really listen. True, my father wasn’t really a reliable narrator of his own experience: He was the man who called wolf because there was always one hiding right behind his eyes. But that’s not why we didn’t listen. We ignored him because his memory loss seemed inconsequential compared to the fact that after years of neglecting our needs and wants, he was finally giving us new memories to remember him by.

But my dad was right. A year later, maybe two, his depression was worse than ever, except now, he was only a shell of who he once was. For a while, yes, he was disoriented enough to be more compliant with us, to go with the flow. But that compliance was never happiness.

ECT didn’t work, at least for him. It didn’t cure his depression, any more than you can cure a werewolf by ripping out his fangs. For my father, the books he’d read, the movies he’d seen, the albums he’d listened to were his eyeteeth, and by taking them out, all we’d done was succeed in making him toothless. In his compliance, yes, we mistook him for tamer, and in his tameness, we mistook him for being—if not happy—then well. But ECT had robbed him of his sense of self.

He didn’t die immediately after that. In fact, he lived another ten years. But he never tried to get better again.

John’s Wedding: The author’s wife and her parents, then from left to right, the author, Sally, and Bruce

When I was a teenager, I felt like I was the first person whose soul was ever scraped raw by the world. When I met others who felt the same way, we bonded to each other like barnacles. Although I don’t have that much in common with them anymore, these teenage friends are still the ones closest to my heart. It’s probably the same for you.

When my father was a teenager, he had a wickedly clever friend. His name was John.

My father and John found companionship in their love of pulp fiction, weird movies, jazz, rock, and psychedelic drugs. They also connected over their mutual battle with depression.

Then, when he was 24, John murdered his parents. He stabbed his mother to death with a butcher’s knife and killed his father while he was watching TV, smashing the elder’s skull in from behind with a single blow from a sledgehammer.

For his crime, John was institutionalized for life. After that, my dad never seemed quite comfortable making close male friends anymore.

I often wonder about this friendship. What was it like for my father?

For a few years, you have this friend, who loves all the things that you do and shares all the things you’re going through. For the first time, you feel understood. But then, this friend, this doppelgänger, turns out to be a maniac and has to be locked up.

Do you come to believe the inevitable endpoint of your depression is insanity, then being locked away forever?

If so, perhaps it was a foregone conclusion that once my father attacked me and my mother, he would believe that he should be locked away. And if the outside world wasn’t going to do it, his subconscious would.

After all, every werewolf story also ends up with self-imprisonment—ostensibly to protect others, but really so the werewolf can protect itself from the wounds of the world.

There’s a theme in literature, closely related in its own way to the duality of the werewolf myth, that I know resonated with my father.

“What makes Hornblower a hero is that he secretly believes he’s a coward,” he once told me when crushing one of his favorite C. S. Forester novels into my hand. “It’s what makes him act, but it’s also what torments him: the insistent belief that if another man were in his place, he would have acted without the same fears and self-doubts.”

What appealed to him in the adventures of Horatio Hornblower was the enormous divide—present even in great men—between our perception of ourselves and the qualities of the person we want to be. It is, I think, a divide that every self-aware adult can identify with; only sociopaths feel there is no divide within themselves at all.

The divide never goes away, but those of us who are able to achieve contentedness in our lives are able to bridge this gap over time, establishing a link of understanding between the reality of our condition and our own expectations of ourselves. A life well-lived is one that adds new boards and nails to that bridge every day.

As for depression, it’s the chasm that exists between. You build your bridge, don’t look down, and pray it never swallows you, because if it does, you’ll fall forever in that bottomless gulf, and die without ever landing.

That was my dad. The bridge he tried to build for himself earlier in his life inevitably broke underneath him. And in the gulf into which he fell, he fell forever, stranded within arm’s reach of both the person he was and the person he most wanted to be. We, those who loved him, wanted him to climb out, but the gulf was too wide. Once he fell, the closest we ever saw him come was when his fingers scraped the sides.

My father was my hero, but he was also the person I spent my whole life trying as hard as I knew how not to be. It’s filled me with complicated feelings about him—feelings I don’t know I will ever entirely know how to resolve.

So if, through depression, he was what I’ve called him—a lycanthrope of contrasts—then I’m a werewolf too.

When I remember him, the full moon will ever rise upon my thoughts.

Tales From The CryptNo. 39 (Published with permission, William M Gaines Agent, Inc.)

When my alarm goes off at 7:32 a.m., I slap at it while trying to dodge a blinding ray of morning sunshine.

That should get me going. Instead, I groan and try to turn away.

The light sears my sensitive eyes, and the ache in the back of my neck doesn’t so much abate as twist when I rotate my head. The inside of my skull feels raw and fuzzy like an inverted tennis ball.

My husband hears my muffled moaning in the next room and comes in to check on me. “Is it your head?” he asks, already knowing the answer and leaning down in case I’d like his help sitting up.

I do. As I sit upright for the first time, I get that initial diagnostic blood rush that helps me gauge how soon I need coffee, or ibuprofen, or something stronger to make it through the morning.

Migraines can make even the healthiest body feel aged and weak.

This particular day, the pounding subsides after about two minutes. That means it’s a good day. At this rate, I’ll be at my desk working within 30 minutes.

With my right hand on my temple to ease the throbbing, I shuffle to the bathroom and shake two pain relievers into my mouth. The tap water seems extra cold this morning as I wash down the tablets, then splash my face. I wonder if other people–people without chronic migraines–feel the same intense relief of icy water on their skin, the way it feels like it penetrates the surface, tingling with healing powers.

I head into the kitchen and hit the button on the electric teakettle to get water boiling for coffee. From there, my hand goes automatically to the refrigerator. There’s a cooling eye gel roller in the door. I smear it around my eyes and on my temples, which probably makes me look even more manic than I feel.

But mostly, I don’t feel manic. I feel tired.

Migraines can make even the healthiest body feel aged and weak.

A National Epidemic, Especially Among Women

Describing a mostly undetectable illness can also wear a person out. According to the Migraine Research Foundation, more than 38 million Americans suffer from migraine headaches. Of those, a whopping 28 million are women. It’s a fairly common condition, but talking about pain, especially invisible pain, is intrinsically linked with gender norms, no matter how enlightened you think you are. For years, I apologized for inconveniencing my friends. Even now, I’m overly grateful that my kind husband is such a supportive caretaker, simply because I’m so used to explaining away my own suffering.

I’m not alone in battling the stigma, as migraines have unusual cultural baggage. Back in 2011, then-presidential hopeful Michele Bachmann was roundly dismissed as a strong contender due to the sexist assumption she wouldn’t be able to hold higher office while suffering from debilitating headaches. Say what you will about her political positions, but women migraine sufferers are often used to defending their pain in an uncomfortably similar manner.

This isn’t about gendered weakness; it’s scientifically proven that women experience more pain than men. Studies suggest that because men’s and women’s brains are different, women are more sensitive to pain, which certainly could explain why women are also the majority sufferers of conditions such as fibromyalgia and osteoarthritis, as well as migraine sufferers in far greater numbers. Women have also been shown to be more resilient when it comes to tolerating pain, though I have to wonder which came first: all this gendered pain or our ability as women to deal with it.

After nearly three decades of managing the symptoms, I can tell when a migraine is going to be easy to quash, and when I need to pop a triptan. Depending on the day and severity of my symptoms, some people might not even label my pain as a migraine; today, for example, it’s likely a run-of-the-mill headache.

But, given that I’ve had debilitating headaches since I was around 8 years old and been trying to explain them since, I don’t tend to parse the difference anymore. If I can get up and get to work, I’m grateful. That doesn’t mean I’m entirely well, or that my pain doesn’t deserve its severity label.

How Migraines Gave Me My Dream Job

For the past decade, I’ve been an independent journalist, which means I work for half a dozen publications at any given time, covering stories and topics across a range of issues. I relish the education and diversity of subject I get to cover… but I especially love that I get to set my own schedule.

That’s because, as a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me, who can experience extreme torment at the drop of a hat. When I experience an attack, I have to quickly deal with any number of symptoms, ranging from projectile vomiting to extreme sensitivity to sound and light.

As a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me…

Being a freelancer is a lot like being a perpetual student. There are constant deadlines and little resembling a traditional workday schedule. (Going out with fellow freelancers during the week is like the study group part of adulthood.) I love the unpredictability and often late hours, and I’m extremely fortunate to be so well suited to my profession. Some of the sting of freelancing is also taken out of my situation thanks to the fact that my partner’s job provides me with reliable health insurance.

I’ve always been entrepreneurial by nature. During graduate school, I had several jobs—in upscale restaurants and university offices—that helped cement my desire to figure out how to be as professionally self-sufficient as possible. In each of them, my migraines helped quickly drive me from the job.

In one administrative position, the office’s overhead fluorescent light panels often made me ill, or at least threatened to do me in. I’d be fine for weeks at a time, and then, due to some unknown trigger, the lights would do me in, and the migraine symptoms would suddenly show up. I’d have to ask to go home sick in the middle of the afternoon, helplessly trying to explain that, like Cinderella at 11:15pm, I was just 45 minutes away from a complete breakdown. “You see, I can already tell that if I don’t get to bed now, I’ll be blindly throwing up in the ladies room in less than an hour.” Talk about oversharing… but how can you discuss a sickness you can’t see if you don’t overshare?

But there are worse things than managers that don’t understand. After going home with a migraine at a high-end waitressing job, my paternalistic boss decided I didn’t need to come in the next morning.

How can you discuss a sickness you can’t see if you don’t overshare?

“You should rest,” he insisted, and took me off the schedule even though I was well enough to go in, and needed the money.

“I’ve had migraines. I know how they are,” he said as if I didn’t know the same.

It wasn’t long after that I swore I’d find ways to not be reliant on people like him, who both seemingly cared but ultimately robbed me of the one thing a job is supposed to be about: making a living.

Photo: Gustavo Devito

But Self-Employment Shouldn’t Be The Only Solution

Illness and disease are often talked about in terms of cost, and I don’t just mean health insurance or prescription medication.

Recently, after spraining my foot while out reporting in the mountains, I began thinking about the personal and social costs one incurs from some sort of symptom set or constraint. I can still walk, but in a controlled ankle motion (CAM) boot, I’m forced to be steadier and slower. If I want to get around quicker, I could spend money on a taxi. Even I want to take public transit, a cheaper option, I’ll still likely force some small percentage of commuters to wait on me. My personal injury or illness may mean the bus doesn’t run on time for a large group of people.

When my migraines were more frequent and intense, it had measureable costs. There is immense privilege in being able to be self-employed, and to have access to the drugs I need. There were times when my preferred prescription, still under patent and unavailable as a generic, cost $45 a tablet without insurance. Weighing whether and when to treat symptoms is something far too many people consider every day. If my husband were ever without full-time work and health benefits, I’d have to reconsider the independent nature of my career.

As with other gendered aspects of illness, I do wonder: when getting sick at work got to be too much of a hassle, why did I solve the equation by removing myself as the variable component? I probably could have explained myself more thoroughly or found workplaces more accommodating to my condition, or to diversity and differences more generally.

For me, being self-employed is a natural fit. I’d always wanted to work from home, and I’m fortunate that enough factors in my life made that a relatively painless transition.

People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met…

But I’m not convinced that freelancing and self-employment offer the easiest career path for the majority of workers, even though traditional workplace culture has been slow to evolve to accommodate a range of limitations, visible or not. People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met, which is sort of what I did without fully questioning why.

People with health conditions and limitations are often the people who are most vulnerable, and many rely on the health insurance coverage and guaranteed salary offered by traditional full-time employment. Statistics show that the percentage of the workforce that freelances is only going to continue to grow as the post-recession economy remains sluggish and companies can save resources by outsourcing work to contractors. On one hand, that seems liberating for some people. But asking those already at risk to invite and endure further uncertainty by working on contract, or to worry about finding and affording their own health benefits, seems like a particularly volatile, unfair situation into which many may feel increasingly forced.

As much as I’m an evangelist for freelancing, I’m also an advocate for being empowered to meet your own needs. It shouldn’t be up to individuals to wage every wage battle on their own. But until there can be more open discussions about the limitations people face in the workplace and better policies to support a wider range of worker, we might have to keep oversharing with our employers, and with each other.

The summer I was three, my parents took me to Jones Beach to play in the sand and drive the kiddie cars around a small circular track.

I took driving very seriously, negotiating every twist and turn with elaborate care. And my efforts did not go unnoticed.

“Look how well she drives!” cried my mother.

“She stays right on the track,” said my dad.

I was impressed by my own virtuosity. In fact, I was so good that when we went back the next year, the kiddie car operator remembered me.

“There’s that little girl who never goes off the track!” he said.

Wow! I must be really good. I tried not to let the exhilaration go to my head as I carefully turned the wheel, not once veering off the track. And then, inexplicably (I must have suspected something) I took my hands off the wheel. The car kept circling the track, maneuvering perfectly around the curves with no help from me. I was crestfallen. I was also pissed off. The adults had given me the distinct impression that I possessed a rare talent for kiddie car driving. And I had believed them! Now, it turned out, I hadn’t been doing anything at all. Nothing, nada; it was all an elaborate lie.

This experience left me with a lingering suspicion of adults. What other fictions were they perpetrating? I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic. And the kiddie car syndrome – the illusion of control – was a thing of the past.

Or so I believed.

“I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.”

For over ten years now I’ve been guiding my husband through various health crises including several strokes, two valve surgeries, and a series of life-threatening leg bleeds caused by his medication. John, who was a college professor for fifty years before he retired, is more interested in the geneses of totalitarianism and the paradoxes in Gulliver’s Travels than the irregular beatings of his heart. So I became his health advocate.

And I am a fierce advocate. I foresee danger and circumvent it at every turn. Once I ran into a hospital procedure room where John was about to have an angiogram.

“Don’t put the catheter up his left leg!” I cried.

John had been in the hospital for several days and I suspected, from something he’d said just before the procedure, that he’d had a bleed in his left leg during the night.

My dramatic announcement stopped the doctor cold, which was a good thing because I was right about the left leg. John had sustained a bleed during the night, and putting a catheter up his newly-injured leg might well have resulted in a more serious bleed. Once again, with skill and foresight, I had narrowly averted disaster.

For the next five years, John’s health was relatively stable, which, in the language of medicine, is a beautiful word. Then, two weeks ago, he had a seizure in the middle of the night. I was completely unprepared for this and didn’t recognize it for what it was (a post-stroke seizure). I fully believed I was witnessing my husband’s death. After calling 911, I shouted to our twenty-year old daughter. Together we managed to turn him over so he could breathe freely until the ambulance arrived.

John is home again now, and doing well. But his seizure reanimated the painful disillusionment on that long-ago day in Jones Beach. During the past ten years, I believed (or talked myself into believing) that I was single-handedly responsible for my husband’s health and well-being, vigilantly steering him around sharp curves and avoiding dangerous cliffs with diet, exercise, and close monitoring. Now, once again, I’m reminded that I may be in the driver’s seat, but I’m not steering the car – at least not one controlled by a kiddie car operator who keeps me on track. The car I’m driving now (metaphorically) is more like a bumper car. I still manage to circumvent some collisions, even some dangerous ones. Those I don’t avoid I interrogate myself about endlessly. What if I’d stayed to the outside track? Could I have avoided that last bump? What about the red car racing straight towards us? Can I make a sharp turn and speed away?

In spite of my vigilance and John’s cooperation, there are bumps and jolts I have not been able to avoid. Some have been more sharp than others.

People often say to me, “You’re doing so well with John!” or “I’m really impressed with how well you take care of John.”

To me, it doesn’t feel like I’m doing a spectacular job caring for John, because the outcome is not spectacular. After all, inevitably, the ride will come to an end. But for right now, I’m keeping hands securely on the wheel.

Folks is an online magazine dedicated to telling the stories of remarkable people who refuse to be defined by their health issues. By sharing the experiences of these individuals, we hope to change people’s notions about what it means to be ‘normal’.

Editorially independent, Folks is sponsored and published by PillPack. Part of our mission at PillPack is to create healthcare experiences that empower people. We don’t believe people are defined by their conditions. We pay our contributors, and we don’t sell advertising.